New here

[Pirate]

Hi everyone. I am new to this forum and a 24 yr veteran of Crohn's.
I was diagnosed in 1985 and had quite a bad time for several yrs before betting things under control. After quite a long time without any problems I recently (last Monday) ended up in the ER with severe ab. pain. After the usual test it was determined that about a 6 " section of my small intestine was inflamed. GI wants to put me on either Remicade or Humira but I would prefer not to at this time. I think I can get it cleared up with Entocort and digestive enzymes. I have felt the worst many yrs ago and this is nothing compared to it.
1986 I was really bad and had went from 160# to 118# and was passing out , couldn't keep anything in my stomach. everything kept comeing back up. When I finally went in my GI found my stomach so full of gangrene that I had to have my stomach pumped for 7 days and get pumped full of Prednisone. I couldn't have surgery because the blockage was in the Duodenum. GI told my wife if I had waited any longer I would not have had a chance. So this bout is nothing compared to my worst.

 

[Crohn's 35]

Welcome Pirate! I am fully aware of your problems, I had two resections in the Ileum, and figured that surgery my first time was worth it and it was until 6 years later, and I was on Entocort at the time. I am aware too that there is no cure but I had too many blockages and that is worse than having a baby. Take that anytime. Remicade is the first choice, but I was allergic and Humira didnt work to long and therefore my Gi things it is a waste of trying Cimzia. I use antibiotics and probiotics and was DX 17 years ago but symptoms since I was young. AFter awhile your body slows down with major flares, but some can still be very painful. I know what I can and can't get away with. I see some people on a lot of drugs and I wonder how do they know what is working? I have been there too. My experiences are you dont need a tital wave to put out a candle, because we are destined to be on drugs a very long time. I dislike being on all the drugs and with time they have done some damage to my body. You must do what you have to do to be pain free right? Take care, lots of good advice on here!

 

[Peggy]

Hi welcome Pirate, I have also had CD for 23years its not much fun when you feel so ill. I have had it rough but never as bad as yourself. hope you feel better soon. Peggy

 

[imisspopcorn]

Welcome to the forum Pirate. I hope you get some relief soon.

 

[Pirate]

Thanks for the warm welcome.
I have never had to have surgery so far. When I had the gangrene with it being in the Duodenum the GI said that there was no way they could do surgery because there isn't possible to go without it. I do have scarring there along with many other places from all the other inflamations and blockages. Luckily my GI was some one who didn't jump right in with surgery. My new GI (the old one retired) is a little more eager to jump into the big guns where I would like to try to get it back with either Endocort or Prednisone.
I have to laugh cause in Feb 2008 I had a heart attack (5-6 yrs of eating ramen noodles at work cause they were "safe") and after having stents put in they put me on Plavix . I told the one GI that was covering that there was no way I could take them and he said that I had to cause we had to fix the heart first. Needless to say in a week and a half I was back in getting 4 units of blood because I had started bleeding in my intestines. No more Plavix for me. Than I was back in another week cause when they did an upper GI the week before I didn't drink enough water to flush out the milkshake that you have to drink. So it turned to concrete and blocked me up. what a mess. What a lot of pain.
So remember to drink a lot of water after having any procedure using Barium or anything else they make you drink.

 

[chelli]

Welcome Pirate. I am kind of new to crohn's (dx in 3/09) and I also had a heart attack in July (Genetics and bad diet). I do take plavix but I haven't had much in the way of bleeding. I'm also on the other 5 meds that they generally prescribe for the heart and remicade (not sure it's working though).

Good luck to you.

 

[Pirate]

All I'm taking is low dose bayer. I had my stress test back in the spring and I aced it. They do have me on Nexium to make sure the aspirin doesn't give me another ulcer.

My heart attack was out of the blue. My wife and I walk all the time and are very active. Its nothing for us to be camping and walk anywhere from 6 to 8 miles. We also really enjoy riding bikes. Do a lot when the CD isn't active. We don't drink and she makes me eat fairly healthy meals. No fatty meats, fast food or really spicy foods. About twice a year we get Jet's pizza. We can all our own veggies. I eat a lot of fish, chicken and turkey.